So happy to have found this group! Here is my story.
Since November 2021, I have felt a hard bump on my neck just below by left year. Primary doctor could not feel it on exam.
In spring of 2022, I went to an ENT for my chronic GERD/sore throat problems (previously diagnosed but unresponsive to acid eliminator or reducers). I mentioned my bump and he did feel it when I put his hand on directly on the spot. He ordered a CT scan to rule out a tumor. He also mentioned in passing it could be a cervical bone.
Results were “unremarkable”, meaning normal, however. No mention was made by the test result or by the doctor of the styloid process bone. The ENT said perhaps I should see an orthopedic doctor about the “bone/bump” if I was still concerned about it.
A short time later, my dentist recommended I see an oral surgeon. In June of 2022, on a consult with the oral surgeon, which included a panoramic X-ray, I finally had my answer. The oral surgeon was the first one to feel the bump in my neck on first try and first person to diagnose it accurately and communicate clearly to me. The X-ray revealed elongated bilateral styloid processes. He asked whether I felt a protruding sensation in my neck, which I do at times. He said the styloid process projects from the temporal bone. He indicated that since I’m thin that was why I felt it. He mentioned Eagle syndrome, but didn’t think I needed to do anything about the condition since my symptoms were minor.
Since that time it seems symptoms have slowly increased but are not debilitating. Mostly the bone in the throat sensation, and very recently a flare up of TMJ, and some mild, quickly passing pain on the left side of the head. So, my questions are?
- Do I need to explore further with a doctor experienced treating Eagle Syndrome or learn some techniques to alleviate symptoms?
- Does one avoid sleeping on the side that has the more prominent styloid?
- What topical creams etc. might help with pain or tenderness in the area?
- I prefer a conservative approach, but at what point does one consider surgery?
- Lastly, I live in the Chicago area, can anyone recommend a Eagle knowledgable doctor?
I thank you in advance for any suggestions or help you can offer. Just knowing what it is I have and that there are others who have the same “odd” thing is already a help!
Hi & welcome to the site!
Hopefully you’ll have had a look at the Newbies Guide Section with info about common symptoms, so you may well have seen that GERD/ sore throat symptoms are quite common & can be down to nerve irritation, often the Vagus nerve affects digestion.
There are nerve pain meds which might help with the poking in the throat sensation. Some members have had chiro treatments which have helped temporarily, but you would need someone who knows about ES, as they could do harm otherwise. Steroid / lidocaine injections can be done into the tonsillar region by an ENT, if it does help it’s usually only temporary. Some members have managed their symptoms this way for quite a while. Also some members have used lidocaine patches or cream on their necks which helps a bit.
Usually it’s painful to sleep on the worst side so people avoid it for that reason, I found sleeping propped up more helped me as well, that was suggested to me on here & it was a really useful tip!
Deciding when to have surgery is a difficult decision, as the recovery isn’t always easy & there are risks. Usually we’ve got to the point where quality of life is badly affected and it then becomes worth taking the risks, the benefits of surgery outweigh those. I lived with the pain for a year as it was controlled reasonably well with nerve pain meds, but then started to get vascular symptoms-these made me feel pretty ill & were quite scary so I pursued surgery.
Here’s a link to the Doctors List in the Doctors Info Section- you can use the search tool for looking up doctors names in the past discussions, to see how many people have had surgery with them etc.
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Hope this helps!
@Rose I was also able to feel my styloids on the outside of my neck. The left was much more palpable. Both were very sore and tender. Painful if I pressed on them. I had many symptoms and pain and the styloids were in the way of keeping my neck in the correct position. I went 4 years and 28 doctors and I found Eagles myself. I learned how to read my CT scans and did a ton of research. Most radiologists don’t note the styloids on CT scan which is horrible. I brought my panoramic x-ray to my new TMJ doctor and he saw the styloid. That was my beginning! I had my bilateral styloidectomy with Dr. Hackman on January 13th. I haven’t felt this good in 4 years!!
Nothing helped me alleviate the pain. I felt my jaw and C1 hitting my styloids when I turned my head. My IJV was also compressed as well as irritation to my vagus nerve and spinal accessory nerve. My pain and symptoms started in 2019 and just kept increasing. I couldn’t get the surgery fast enough . I’m 7 weeks post bilateral styloidectomy. I live in NJ and flew to NC to have surgery with Dr. Hackman. He’s absolutely fantastic!
You are the only person who can decide if you want to move forward with the surgery. If you do, there are some great surgeons on the doctors list. This is an amazing forum and I wouldn’t be on the other side without them. You’ll get a lot of support here with whatever you decide.
Thank you for your response. It’s helpful to hear your experience. Right now I am not in pain. I am at the stage of taking all the information in and figuring out the right path for me. I am hoping to find a doctor in the Chicago area who has experience with Eagle.
How wonderful you are doing well! Hopefully, you are free at last!
Hello, Jules! Thank you for your welcome and detailed information. I did check out the Newbies Guide and saw the connection to GERD. My primary symptom is a bitter taste in my mouth that comes and goes. I’m wondering if others on the forum have that particular symptom. 7 years ago the bitter taste was diagnosed as GERD, or more specifically, silent reflux because I didn’t have the typical heartburn etc. The connection to Eagle makes sense, since none of the usual GERD meds prescribed have worked for me.
What were your vascular symptoms? I’ve had vertigo for several years on and off, and occasional light headedness. I hope the surgery has helped you be free of pain and worry,
Since most of my symptoms come and go, my aim right now is to manage them and also find a Chicago area doctor who has experience with Eagle if things should worsen. I appreciate this forum as I traverse this new condition. Thank you again!
I think some members have had altered taste with ES.
My vascular symptoms were feeling off balance. drunk really, dizziness, head and ear pressure, tired & brain fog, & some weird sensations of feeling closer to the ground than I was, falling & also sort of sucking/ rolling inside my head.
I hope that you can find the right doctor!
Thank you! Appreciate your response. I have vertigo from time to time but not debilitating, just when I turn to one side. Good balance otherwise. I’m glad you are better!
This is very interesting. I have been making the doctor rounds because my GERD has become intolerable. We have pretty much figured out that digestive issues are causing the shortness of breath that has been plaguing me since last summer. I’m barely eating. Taking a SIBO test tomorrow, and having upper and lower GI studies soon. It hadn’t occurred to me that it could be connected to the Eagle Syndrome. Of course I’m in a more difficult position because the problematic styloid is gone, so I have fewer options. But if the other tests turn out negative or don’t fix the issue, I guess we’ll be looking at the vagus nerve and trying to figure out what to do about it!!!
Many of our members have had digestive issues prior to ES diagnosis & from that we’ve learned that an irritated vagus nerve can be the cause because ES surgery has helped with recovery from that problem in a number of cases. There are others though for whom it made no difference. I’m sorry you’re in that group, @Bopper! The vagus can also be irritated by scar tissue, inflamed muscle or even vascular tissues pressing on it. A FIESTA MRI/Neurogram is a scan that looks at nerves so perhaps that would be in order if nothing shows up from your other testing.
So sorry that you’re having this issue- sounds as if you didn’t have it before surgery? if not, maybe as @Isaiah_40_31 says it could be scar tissue? Some members have had cold laser therapy for scar tissue, but it has to be done very carefully in the neck area…
I think others have struggled with SIBO on here too…
Sending you a hug
@Jules and @Isaiah_40_31 this discussion is fascinating me so much! I have had the digestive issues for YEARS, but now that I think about it, they got a lot worse after surgery. Not right after surgery, but within a month or two. And the irritated facial nerve got worse as well. No one has really been able to figure out the digestive issues thus far – previous testing came back relatively normal. The pulmonologist I just saw told me that nothing is wrong with me and I should see a psychiatrist. Charming man.
I guess it could be scar tissue irritating the vagus, or perhaps the remaining vascular issues (collateral?) is irritating nerves. I will talk to my PT about cold laser. I’m sure she’s aware of the throat precautions. When I spoke to Dr. Hepworth about laser, he was less than enthused. Thought it could make things worse as well as better. But I’ve had good experiences with it in the past, and never heard of it making things worse. I think we’re far enough out from surgery that I can trust the PT on this one. And yes, it seems I frequently wind up in the “things didn’t improve” group. Oh well, clinging to Romans 8!!!
Jules made a good point about SIBO (Small Intestine Bacterial Overgrowth). A breath test over a 24 hr period is required. The prescribing doctor would provide you w/ a kit to use at home then you would either mail mail or hand deliver them to a lab which provides the results. Unfortunately most “western medicine” doctors don’t think to check for this so it’s often a chiropractor, naturopath or functional medicine doctor who prescribes the testing & treatment. It’s treatable w/ a specific antibiotic & a very restricted diet & can take a couple of weeks to a few months to eradicate. I would do testing for that if nothing else turns up.
“Leaky gut” is another hot topic among the naturopathic/functional med. doctors over the past few years. I’m certain you can find volumes of information if you Google that topic. It also boils down to correction by diet & sometimes vitamins & other supplements.
Whatever the case for you, I hope you get to the bottom of your issues soon!! Good for you claiming one of God’s great promises in a time of trial.
Diet has helped me manage my GERD. Those who are interested can check out the Fast Tract Diet and Dr. Norm Robillard. There is a book available, an App for your phone and a Facebook support group. The diet treats both SIBO and GERD. Mostly it is a high protein, good fats, low carb diet.
Thank you for that information, @Rose!!